I was diagnosed when I was fifteen, in 2013. I had a bunch of GCSEs to revise for, and a methotrexate injection to look forward to every week. I was in pain, had little energy, and was all around unhappy.
I ceased taking the methotrexate after six or so months, because it was making me so miserable (though I recognise it wasn't the only thing making me feel so, it was one of the few I personally had control over subjecting myself to).
I haven't regretted that choice, though I enjoy many crafts these days and find I can't do them for very long because of pain/dexterity issues. Still, I have energy and I do things I enjoy when I can. Every time I go for a walk (which, as a non-driver, is often) I revel in the fact that I have the energy/ability to do so because it hasn't always been so.
[This is where I get to the point:]
Anyway, I'm currently training to be a teacher but I'm having second (third, fourth and fifth...) thoughts about it. In short, and to keep it relevant here (because I think The Student Room is more appropriate for the full assessment) it's not something I want to spend time doing when there's a reasonable possibility that one day my health could deteriorate. I'd rather spend time doing something I find pleasure in, and which doesn't drain me, because one day I could end up back on medication and unable to engage in crafts etc.
I recognise that in 20+/- years, providing I am still alive (because humanity is such a frail condition) I might not be able to do many of the things I enjoy today.
But I haven't been able to enjoy many of those things whilst my time has been consumed by planning/preparing/marking/attending meetings, and that feels like such a loss.
I recognise that humanity's frailness is something which affects everyone (freak accidents happen) but I also note that there are additional difficulties which make one additionally prone to things being cut short.
(Might also be worth adding here that I lost someone this year - not to scleroderma, but to the general frailty of humanity, and which has kind of made me a bit more conscious, perhaps)
And I wondered whether this is something anyone else considers? If not regularly, then at some time?
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Thank you for sharing your story. I don’t have scleroderma but I do have a form of vasculitis that is also likely to get worse in the future. I was diagnosed when I was 22 three years ago, so a bit later than you (I had just graduated when it kicked off). I initially also found it quite hard, as I felt quite unwell but the medication prescribed didn’t seem to make me feel any better (and if anything, worse). At the time of my diagnosis I was about to move countries to do my “dream job”, and I found that to be more frustrating than anything else. The doctors kept trying to tell me that I could still make the move, even though they hadn’t started me on treatment yet, hadn’t finished the scans and tests they wanted to do and it was getting closer and closer to when I needed to move. So I had to make the decision to decline that job offer and cancel my plans, as I didn’t want to end up back at square one again with a new doctor.
I decided I would stay but find an equivalent job based here but with frequent travel abroad, and as luck would have it a year later, I did. I’ve come to terms with the fact that I can’t go out every night like I used to when I was a student, (if I go out “out” on say a Friday night, I’ll probably need at least the rest of the weekend to recover and sleep). However, I try and make the most of things as they are now and not to think about how my condition might get worse in the future, as that conversation never ends well in my experience. (It doesn’t stop me from thinking about it from time to time though, I just know no one, including the doctors can give me the answers that I really want).
While having an autoimmune condition sucks in a lot of ways, I did find it quite helpful for helping me reassess my priorities and think about what I really want to do. For example, I’ve wanted to learn to ski for years, but never got around to it. So in January I booked my first skiing holiday with a friend and finally learnt. Yes, it was really difficult. I have primary Raynaud’s and some peripheral neuropathy in my feet too and at one point the instructor asked me if I was really telling my feet to move, as they weren’t doing anything! However, I got the gist eventually, and could ski better than my friend (who is otherwise healthy) at the end.
Bringing it back to your situation, though, it doesn’t sound like your doubts about teaching are just because of the Scleroderma? I have a friend who did a primary education degree, and had quite niggly doubts but kept going and graduated. She then did her NQT year and then finally admitted it wasn’t for her. Now, she’s really frustrated she didn’t say something while she was at university, as she actually wants to do something else but only has teaching experience and can’t get funding for a new degree. Can you explore your options (e.g. would you be able to get funding for a different degree, find out what other things you might want to do) and maybe talk to your personal tutor at university about it? The hardest bit is knowing what you want to do instead, but it’s a very personal decision and this seems to me like something you have been thinking about for a while.
Hi,I was so sad to read your post as you are so young to be feeling so negative about your life and your future. My son was diagnosed with mixed connective tissue disease when he was 10. Part of this condition is scleroderma. It was horrible watching him suffer from the condition and the side effects of medication, which also included methotrexate. He felt pretty rubbish most of the time. I worried about his future - what job would he do, how would he cope, etc. I also worried about his future relationships, how he would father a child if he had to stop the methotrexate to conceive etc etc.
Fast forward 6years and he is now a fit and healthy 17year old on no medication at all. We have achieved this by changing his diet (quite radically) and addressing lifestyle factors that were affecting him.
Food and lifestyle changes can make MASSIVE differences to those with autoimmune disease. You can find lots of information on line about it - search autoimmune protocol diets, leaky gut, sources of toxicity in autoimmune disease.
It can take time to see the results but you may see some benefits after a few weeks of changes. You might benefit from seeing a functional medicine practitioner in your area or a nutritional therapist.
I wanted to share this with you as you are too young to be feeling like you are. You are describing the future that I thought my son would have, that I dreaded him having, but we have managed to turn things around for him. Now he can look forward to a normal life, albeit a bit different from his peers in terms of his lifestyle. I know that we are all a lot healthier as a family because of the changes we have made. I’m sure you can feel better if you look at the root causes of what is making you ill in the first place.
Happy to send you some more links if you want to look into this some more.
That does sound quite interesting (and positive). Yes, any further links would be much appreciated.
I have just discovered that I appear to be gluten intolerant (although I'm not sure of the extent of it yet). Eight years of stomach pain later 😕 But all progress is progress. I await a further consultation with a dietician to determine next steps.
Hi. It is no surprise at all that you have a gluten intolerance and abdo pain. Poor gut health leads to a ‘leaky gut’ which allows toxins and undigested food to leak into your system, triggering an immune response. Your dietician may well advise you to reduce gluten and help you with this but probably won’t make the connection between this and your autoimmunity. There are other foods which are very inflammatory as well. It is likely the case that your gut symptoms precede your autoimmune symptoms because this is what has caused your autoimmunity.
Don’t know if this will be of help to you or not - hopefully it will be. I was diagnosed with scleroderma in my late twenties and had a few pretty miserable years - couldn’t walk far, found difficulty doing anything with my hands as they were so bent, digestive problems etc. After treatment with Penicillamine I improved greatly. I am now 74, can walk for miles, have occasional digestive problems, right hand still bent (the only problem that causes is that I can’t wear rings in that hand). I have a new man in my life (at my age!!) after 8 years as a widow. I know I’ve been lucky but you could be too. Good luck.
Hi! Honestly, I could've written this myself. I was diagnosed at 22 in 2016, unfortunately suffered from a scleroderma renal crisis (fairly rare, don't worry) and spend 3ish years on dialysis. I recieved my transplant last December and this year I went back to college to do an Access course in Teacher Education. Hopefully I'll be off to NTU in September (assuming unis allow you back on campus this year).
I won't lie to you, having being diagnosed relatively young and knowing what would happen to me one day was really depressing. The fact had so many severe health issues at 22 made me sure I wouldn't live very long, and I lived like it. Thankfully, my numbers these days are more or less great. I'm very aware one day they might not be, and having had 2 friends suddenly die this week has made me aware that no-one can really predict when that day will be.
All of that depressing stuff being said, I still do my hobby-making and painting warhammer figures, albeit for small sessions in-between assignments and usually with numb fingers. I play video games and occasionally exercise. I live my life pretending that I'm healthy so that when I'm not I'll have no regrets. I date, well I used to, I'm in a relationship now, and socialise same as everyone else.
I spent 4 years hobbying everyday, taking long holidays (with all my dialysis equipment), going out, and just living. I was acting like my life was short and I wanted to make the most of it. Now being on my way to uni at 26, I regret not progressing my adult life in my younger years, not because I'm less fit to now, but because it almost feels like a waste.
So to answer your question (sorry about my rambling), yes, I am very aware of what awaits me. I do think about it most days but not as a negative, it just reminds me to live as normally as I can for as long as I can. Also, if I may, speaking as someone who passed away for 8 minutes after cardiac arrest and was then bed bound for so long she had to learn to walk again, the worst case scenario isn't that bad. You learn to make small adaptions so you can keep doing the things you love. If your hobby becomes too much of a struggle look for tools online or ways to adapt it to make it easier for you.
Omg how helpful I have just started mycophenolate 3 weeks in. I have a renal problem too but not transplant hopefully not. But it is encouraging to hear your story.
I wish you all the best and hope you have a positive experience with mycophenolate as many people have.Good luck and best wishes x
Hi there. I’m thinking that another person was right to say that this post isn’t necessarily about your scleroderma - it’s about whether you actually want to teach? Is that right?
Re your age: I have 3 adult sons age under 30. So far none of then have developed autoimmune diseases -.unless severe eczema and Aspergers count. I think I’ve had mine from infancy but things change, symptoms change, some conditions remit as others take over. Me and my husband are freelance creatives in late 50s and we could both have trained as teachers and be looking forward to pensions by now.
I was only diagnosed with RA, then Sjogrens then, this year, systemic sclerosis - ten years ago. I have no idea what impact this overlap CTD bundle will have on my life expectancy. But to be honest, I have always focussed more on the quality of my life than the quantity of years I have. And all I’ve ever wanted to do is be a creative practitioner- write, draw and paint and sing. And this is all I’ve done and nowadays I haven’t much of a career so I’m waiting until the next period of remission of this latest disease and for things to change. I’m a pragmatist but an optimistic one too!
So while our friends and family members are looking forward to receiving their pensions - we have none, apart from a basic State one to look forward to. But we have enough in savings to just about get by and we adore our adult children and help them when we can - and they help us too by phoning daily and by choosing to pursue the career paths that make them happiest. One has a great new well paid job and, due to Covid, the others are unemployed. That’s not fun but they are all resourceful and keep going somehow. We sacrificed flashy home and cars and foreign holidays and meals out to do what we want to do. This is really okay for us.
Would I advise them that our sons should be aiming to work in well paid or secure jobs just for the sake of it? No. Do I regret that I and my husband don’t have the same pension security as friends and family who have worked their backsides off at jobs they have long grown to detest? No.
Would I advise those diagnosed much sooner than I was with my diseases, to bear in mind that life can be short with or without scleroderma? Yes. I’ve had hypothyroidism and alopecia areate and many other tell tale signs of what was to come since childhood/ infancy. But in those days they had no name for my many symptoms and I was just told I had low energy and was always unwell due to psychological factors. That was awful because I believed them and still beat myself up a lot for my diseases.
But in another way it was okay because, steroids aside, I never took any medicine or recreational drugs or drank or smoked excessively because I was always too scared of the effects on top of my existing unwellness. Now I feel I could quite happily get into legal drugs fir pain and not have worry about the long term impact!
Quality of life, including having enough money to get by, is very important. But so much about being mortal is about spending our precious lives doing what we love and find fulfilling - and that’s all about wellbeing.
So my advice would be not to live your life assuming that your scleroderma will progress greatly. It may just not. It may just change course. Try instead to focus on what you think will bring you enough money, enough satisfaction and enhance your overall wellbeing most. If that’s teaching then great keep going if and until you just can’t. Teaching is a vocation not just a security blanket. The world needs good teachers who love teaching - same with doctors, nurses, social workers, scientists and artists. If it’s not for you then it’s not - scleroderma is irrelevant to this I feel.
The rest is in the lap of the Gods. X
Ps and I took methotrexate and 3 others - had terrible side effects - and now do very well on Mycophenolate.
As someone with limited Scleroderma who is just about to retire from teaching, I'd say if it is something you feel you would like to do go for it. It can be a challenging job and exhausting but the positives outweigh the negatives for me. Many enter the profession and it turns out not to be for them whilst others absolutely love their work. You will never know unless you try.
You shouldn't worry about your Scleroderma, local authorities are usually very understanding and accommodating employers.
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